Being a special needs mama, I have dealt with many ‘what if?’ questions.
Many overwhelming feelings of guilt and regret, tears and restless nights.
My youngest daughter Brielle was born very prematurely, about 15 weeks early and is very fortunate to be alive today.
She’s now four years old, an adorable bundle of joy and mischief!
Our life wouldn’t be the same without her.
She’s profoundly deaf, mostly blind, doesn’t talk, primarily tube-fed, has low tone cerebral palsy (not walking yet) and has chronic lung disease.
I remember clearly one of my earliest feelings of guilt was that of not being there fully for my girls.
I’ve been blessed with four beautiful treasures.
In the six months Brielle spent in the NICU, I was back and forth sometimes twice a day between hospital and home and spent nights in the hospital with her when things were especially bad.
I physically could not be in two places at once, although I wanted to divide up all my love and attention and be the best mother I could be to ALL of my girls. Guilt. I just couldn’t do it as well as I wanted to.
Then as I asked myself how and why was she born so early (placental abruption), and I started feeling guilty about not being on bedrest earlier.
Even though I did more than the doctor ordered.
Other guilty thoughts plagued me – should we have asked to be transferred to a better hospital and higher level NICU?
Did one of us infect her by not scrubbing our hands properly and subsequently her contracting a nasty pneumonia?
She is mostly blind and suffers from chronic lung disease as a consequence of the high concentrations of oxygen and artificial ventilation - that may have been avoided had she not had MRSA pneumonia, twice.
And there’s the guilt with my older children - I often devote so much time to Brielle that they have to wait for me or lose out on my time altogether.
Not being able to commit to many extra-curricular activities as we work around Brielle and her needs first.
The guilt around housework – not being on top of laundry at times, and not having the time or energy to always cook the most wholesome, diverse or homemade meals.
I also feel pangs of guilt around the lack of time with my husband for real communication, dating, having fun together.
Four kids and one of those with additional needs takes up so much of our time, we have to make an effort to have some much needed time alone.
The guilt can be crushing if I don’t get her in her walker, or do her exercises on the ball, or read her books with her, or teach her new signs, or whatever it is I wished I’d done in any given day.
I feel like I’ve failed her as her mother and primary therapist.
She relies so heavily on me and I feel guilty when I don’t do the things with her that she needs to do to progress and thrive.
So I hope in sharing this, if you also struggle with feelings of guilt as a special needs parent, you’ll realise you are not alone…the very fact that you feel bad about less-than perfect outcomes or areas in your life shows that you truly care.
But so much of our life is out of our control, and we also have limited time in a day.
So I’ve come to accept that all I can do is do is my best.
And you know what?
My best WILL be enough for my child, and the rest of my family.
Instead of heaping on the guilt, heap on some grace
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